1 (edited by PCL1029 Sun, 26 Jan 2014 22:40:49)

Topic: Example & Experience of A 2nd Opinion-@ Mayo Clinics

Hi, everyone,

the following is for someone who wonder what a 2nd opinion is and how ,in general, what the experience is or will be.

After 2PET scans (2 month apart each) indicated "Stable" after microwave ablation; and Ca19-9 went up from 37 to 61; I called Mayo for a 2nd opinion on what to do next. Here was what happened:
1. Fasting the night before.
2. 1st day upon arrival in the morning went to the lab and get the lab work CBC,BMP ,Ca19-9 etc. done. then eat lunch at the cafe.
3. MRI @ 5pm.-last about an hour( no food were allowed 4hr prior to the scan.)
4. the next morning at 1pm,started with  GI specialist Dr. Roberts Lewis for consult to map out the plan of treatment after seeing all the specialist below .Dr. Roberts suspected the microwave ablation that I have had done at the local hospital was not complete and therefore the tumor started to grow again even the PET scan indicated the tumor was "STABLE".(base on MRI scan)
5. 2:30pm saw liver surgeon to rule out resection due to lymph node mets. But  he indicated Microwave ablation may be an option for the tumor in the liver and the result is comparable with surgery ;  in the future,may be SBRT for the lymph node mets but now was too small to do so.chemotherapy should take care of the lymph node.
The most important thing he said is to keep the liver function normal as long as possible and therefore the lymph node  metastasis was not a big concern at this moment.
6. 3pm Dr. Roberts were back in again and had a phone consult with the interventional radiologist  and both agreed with  microwave ablation as an  option;but they would wait for the opinion of the medical oncologist and the radiation oncologist to make the final decision.
7. Next day at 9am, medical oncology consult started with a nurse practitioner(NP) to gather medical history,medication list etc.and discussed chemotherapy options including recommendation for GEM/CIS; but I refused and asked how about Gemox? She said there were not enough  good responses from patients who got GEMOX  at Mayo, so she will not recommend GEMOX. she mentioned I could use Gemzar and Xeloda again  but in combination with other chemotherapy agents and not as monotherapy as I did before.Currently, there is NO clinical trial at Mayo for cholangiocarcinoma Irinotecan ,Taxol are other options she had mentioned.
Since the NP knew I preferred a more personalized medicine approach base on Target NOW and Foundation ONE ,(NGS-the next generation sequencing gene profile.)after she consulted with the medical oncologist for a while,He,
the  oncologist came in and told me that both the lymph node mets and the tumor in the liver would have impact on my life span; combination therapy would be used for the maximum effects. Tarceva may not be a go to drug now but I should continue it until they(the oncologists) will make the final decision by e consult with Dr.  R. Mcwilliams  next Monday. I think he is the go to guy for finding actionable treatment plan base on those NGS reports if there is any. Therefore NO chemotherapy will be recommended  at this time.I asked about immunotherapy like PD-1; He told me  the future of immunotherapy is bright and will be a promising potential treatment agent for other cancers . In the next 1-2 years, some of them will be approved and the oncologists can use them "off labels" for  cholangiocarcinoma. But he indicated that immunotherapy  for GI cancers did not have a strong record of success(ie: IL2 in colon cancer);and it may due to the low volume but  consistent recurrence and the difference in each patient's case .
8. 11am; saw radiation oncologist, he indicated SBRT treatment was not recommended this time; microwave ablation would be appropriate.They also explained how SBRT would be done if needed.
9. Dr. Roberts e mailed me  later indicated they will make a final decision after Dr. McWilliams 's consult. Most likely  I will have the microwave ablation done up at Mayo followed by systemic chemotherapy and/or targeted therapy
afterwards.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Example & Experience of A 2nd Opinion-@ Mayo Clinics

Percy...as always your reports are highly informative.  I have a few questions:
How do they know that the previous ablation was not successful?  Did they determine growth within the ablated or the surrounding area?  What were the results of the liver function test? 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

3 (edited by PCL1029 Mon, 27 Jan 2014 08:09:28)

Re: Example & Experience of A 2nd Opinion-@ Mayo Clinics

Hi, Marion,

They looked at the RFA treated site done in my local hospital and found incomplete burns of the tumor. The tumor shown rough irregular edges especially on  the side of the tumor closed to the hepatic vein. That either means the tumor have regrown or the microwave ablation done previously was incomplete.The doctors there thought incomplete RFA was most likely the reason  due to the difficult location. The PET scans,2 in a row with each two months apart, did not show improvement ; the radiologist at my local hospital who read my PET said the tumor was stable due to the relatively unchange of the SUVmax value.
But it was the relatively same SUVmax value made me worry, it should went down or decrease in a bigger % point even if account for the inflammation of the surrounding area of the tumor after ablation,I think.;plus the CA19-9  double the value between the two PET scans(37 vs 61) and therefore all of these findings prompted  my action for a 2nd opinion right away.
It was  always back in my mind that if I will ever have a 2nd opinion visit again, I will document it and let those patients and caregivers know what actually a 2nd opinion is and how it will go. so they will have an idea of what a 2nd opinion is and I am happy I have done so.I really believe knowledge is the key and if not, they will just recommended GEN/CIS to me on the spot and will not go though a more search of treatment alternative for me.

With regard to the liver enzymes ,all are at the low end of the normal range.and that is a good sign.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Example & Experience of A 2nd Opinion-@ Mayo Clinics

Percy, that was some kind of report. I was also wondering how they knew the Ablation was not complete. I feel so bad that you are like a human guinea pig for everyone! BUT I also know that you are very strong and we thank you for being a light in leading the way through this dark tunnel. I am so honored to 'almost' know you and hope to meet you someday!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Example & Experience of A 2nd Opinion-@ Mayo Clinics

Percy....that again emphasizes the importance of patient knowledge and understanding of this disease. Sure, not everyone is able to understand the clinical aspects of this disease however; it is of utmost importance to seek out experts for interpretation of test results. 
Thank you for helping us understand the complexity of this cancer and the incredible service you provide to the patient community at large.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Example & Experience of A 2nd Opinion-@ Mayo Clinics

I love Lainey's description if you as a "light in a very dark tunnel". Knowing how far you go back with the others on this board I definitely feel honored to have met you in person (and shared a lovely meal!) in San Francisco at the GI ASCO. Your generous and open spirit touches all and I hope that sharing your story is also helping you as well.
That said, I'm really glad that you are proactive and seeking multiple opinions. Sounds like you found some doctors who are truly thinking "outside the box". When will you have the RFA again?
XO
Willow

Willow

Re: Example & Experience of A 2nd Opinion-@ Mayo Clinics

I love Lainey's description of you as a "light in a very dark tunnel"!  Knowing how far you go back with Lainey, Marion and the others, I definitely feel honored to have met you in person (and shared a lovely meal!) in San Francisco at the GI ASCO. Your generous and open spirit and knowledge touches all. I hope that sharing your story is also helping your spirit as well.
That said, I'm really glad that you are so proactive and are seeking multiple opinions. Sounds like you found some doctors who are truly thinking "outside the box". When will you have the RFA again?
XO
Willow

Willow

Re: Example & Experience of A 2nd Opinion-@ Mayo Clinics

Sorry, I have not been able to send the picture to Rick as of yet.  It will be posted on our blog:  The loose leaf notebook.  I promise.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Example & Experience of A 2nd Opinion-@ Mayo Clinics

Percy, you're willingness to share your story with soooooo many strangers who have become your friends, support line, listeners and most of all learners is priceless, I thank you.  Maybe we'll meet you in Rochester when we are there, or if you need someone to be there, just to be there, I'm not far from Mayo at all.

(((((big hug)))))

Theresa

10 (edited by PCL1029 Tue, 28 Jan 2014 21:07:50)

Re: Example & Experience of A 2nd Opinion-@ Mayo Clinics

Hi, Theresa,

Thanks for your complement.
I was at Mayo between 1/20-1/22 with my son. We might actually cross path with you  if you were at Mayo during those days.
If Mayo set a date for my ablation ,I will let you know to see where we can meet @ Mayo if it will work out between our schedules.

As I said before here on the message board, I have no choice but try to learn and share about this disease hoping that we can someday, finding a better treatment alternative or more tolerable therapy  for patients like your mom and me. I can honestly say to you, I am still learning about this disease like you and I will go to conferences to learn more and let all of us, patients and caregivers, know about the most up-to-date information about this disease. As far as I know, the information on this message board is very up to date even when I discussed options with doctors at Mayo. Mayo Clinics ,if you understand , is more conservative among other medical institutions which specialized in CCA.
Anyway, nice to talk to you and appreciate your kind offer of"just being there".

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Example & Experience of A 2nd Opinion-@ Mayo Clinics

Hi Percy,

I also want to join in the chorus of thanks for this post.  It's really helpful and informative.  My favorite part is that your liver test numbers are normal!  I'm also glad to hear that your son accompanied you to the appointments. 

Sending you warm & positive thoughts for more good news to come,
Caroline

Re: Example & Experience of A 2nd Opinion-@ Mayo Clinics

Percy, I work in Rochester at the college, RCTC, anywhere from 2 -5 days/week during the school year.  Give me a shout if your looking for someone to talk to.  I have gained so much knowledge from reading the posts on this website, to the point where one Doctor said "you've really been doing your homework".  I feel like I need to be an advocate for my mom since she really does not want to research this disease because of the prognosis received.  I do have a medical background, I'm a Certified Veterinary Technician, and do know the terminology, blood values, side effect issues, etc. etc. etc.  My saying is "a little knowledge, can be harmful", but not in this case, you need all the info you can absorb.


smile
Theresa

Re: Example & Experience of A 2nd Opinion-@ Mayo Clinics

Percy, I'm hoping you are well and your appointments went well in Rochester.  I know how those appointments can get behind and time gets away.  Let us know how you are.

Prayers to you

Theresa

Re: Example & Experience of A 2nd Opinion-@ Mayo Clinics

Hi,everyone,
Sorry,Theresa,we could not find time to meet.
My appointment including one nite stay after the RFA  procedure. Everything works perfectly. It was the flu like symptoms that dragged me down after  went back home.
Have not eating  for 4 days, it just don't have the mood .
Thanks for your concern, I hope I will be back shortly to join the discussion board.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Example & Experience of A 2nd Opinion-@ Mayo Clinics

Dear Percy,
Praying for your recovery from the RFA side effects. This includes return if your appetite and your spirit.
Love,
Willow

Willow

Re: Example & Experience of A 2nd Opinion-@ Mayo Clinics

Percy
Nice to see you back on-line smile

I pray for your quick recovery, be strong.

T

Re: Example & Experience of A 2nd Opinion-@ Mayo Clinics

Hi Percy,

Great to hear from you again my friend! Was getting worried after not seeing you around for a while. So glad to hear that the RFA went well and I hope that you make a speedy recovery from that and the flu like symptoms too. Get your strength back and once you do get eating again too. We'll see you when you get back here.

Stay warm and be well,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Example & Experience of A 2nd Opinion-@ Mayo Clinics

Good to see your name pop up on the discussion board Percy!  I too am glad that the RFA went well. Here's to a speedy and easy recovery.

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Example & Experience of A 2nd Opinion-@ Mayo Clinics

Percy....hydrate, hydrate, hydrate and please, try to eat a bit.  Four days is way too long to go without solids and especially protein.  Don't worry about us - we are worrying about you this time. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Example & Experience of A 2nd Opinion-@ Mayo Clinics

Percy, YIPPEE for the RFA going so well. PLEASE try to eat even little bits. I was in that spot a year ago and really got in to trouble. Perhaps we should send you some of Duke's Fortune Cookies! My wish is for you to be comfortable and to heal quickly!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Example & Experience of A 2nd Opinion-@ Mayo Clinics

Percy, 

Glad things went well.  Have to agree with the others as to the eating thing.  As hard as it is to do or even think about at times, please try.  Hope things start to improve soon.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Example & Experience of A 2nd Opinion-@ Mayo Clinics

Hi Percy,
Would you recommend going to Hopkins for cc treatment and/or clinical trials over Mass General or John Hopkins? If so, why? My mom has cc with mets, she's 70 yrs old.

Thanks,
Lola

Re: Example & Experience of A 2nd Opinion-@ Mayo Clinics

Hi,
MASS GENERAL will have more clinical trials available.
J H is also very good too.
The main things is the desire of your mom wants to do treatment or not.
Side effects of treatment or clinical trials will affect the quality of life.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.